Response to NY Times Article: Confirming a Diagnosis of Celiac Disease

Scott Adams

In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

Celiac.com 01/13/2010 - The problem with current diagnosis criteria for celiac disease is that it takes a certain degree of damage to intestinalvilli in order to get a formal diagnosis. Since celiac disease with villi damage are just one manifestation of a much broader and more widespread problem--gluten sensitivity--many people who could still develop serious health problems if they continue to eat gluten, will go undiagnosed under the current definition of celiac disease.

The reality of gluten sensitivity is that around 7 to 12% of the US population test positive for antibodies which are an indicator that their immune system is mounting a response to gliadin, the part of gluten that causes the reaction in those who are sensitive. Many of these people may never get flattened villi, however, many may end up with other conditions that are triggered by gluten exposure in sensitive individuals, for example nerve damage (ataxia), liver problems, diabetes, thyroid issues, etc..

In the past 10 years the diagnostic criteria for celiac disease have been changed significantly to include various degrees of villi damage (Marsh Criteria), and as a result, more people are now being properly diagnosed. In the next 10 years I predict that blood tests alone will replace the use of all biopsy results to diagnose celiac disease, as they are a far more sensitive indicator of gluten sensitivity. Once this happens we will finally reach a point where those affected can be properly treated and avoid the risk of the many disorders that have been associated with sensitive individuals who eat gluten, some of which are described here.

Dear Scott,I greatly support your efforts to clarify that health problems associated with malnutrition (induced by shortened or flattened intestinal villi), are only the part of health disturbances induced and/or sustained by immune mediated reaction induced by gluten. Zorica

I think it's wonderful if we can get away from doing the invasive testing to confirm celiac. However, it is well known that the blood test has a high rate of false negatives (I'm living proof of that). I think the medical community needs to be more open to other types of testing to pin down this diagnosis.

Bravo! It is imperative the medical community replace the outdated "Gold Standard" of flattened villi for diagnosing celiac with immediate cost-effect testing which addresses the needs of today's populations to prevent further damage from occurring.